Machine stores speech for future use

Carole Shearn, right, talks with Jocelyn Odom, a speech pathologist in the University of Miami Miller School of Medicine's Department of Otolaryngolgy in Miami, Florida, Friday, August 2, 2013. Odom has been training Shearn, who is 70 and losing the ability to speak due to ALS, on a technology that allows Shearn to bank an unlimited number of phrases via recording to use as her voice diminishes. Shearn records the phrases through the MicPro app on her iPad. The phrases then move to a Tobii monitor, from which the phrases are "spoken" aloud via Shearn's eye-gaze commands. (Marsha Halper/Miami Herald/MCT)

By Elizabeth De Armas
McCLATCHY-TRIBUNE

Published: August 27, 2013;Last modified: August 27, 2013 05:00AM

MIAMI — Carole Shearn isn’t quite sure when she will lose the ability to speak, but she is sure of one thing: Her voice still will be heard, even when the words can no longer be spoken from her lips.

The 70-year-old West Palm Beach, Fla., resident was diagnosed with ALS, also known as Lou Gehrig’s disease, last October. Her form of ALS weakens the throat muscles first.

The progressive disease has no cure, but at the University of Miami Miller School of Medicine’s Department of Otolaryngology, Shearn is the first patient to take part in voice banking, a program where patients who will eventually lose their voice due to diseases such as Parkinson’s, ALS and cancer can record key words, phrases and personalized messages to communicate when speaking is no longer an option.

Shearn uses Tobii Assistive Technology, a speech-generating device, which stores her recordings into categories. She can then use a mouse, touch the screen or even use her eyes to retrieve the sound files.

In case of an emergency, Shearn has even programmed a message saying “get help immediately” and “call 911.” Tobii, which is compatible with Bluetooth technology, will call for her.

“Truthfully, I was so amazed when I found out about the Tobii,” she said. “It makes me feel good that I can personalize my messages to whomever. It is my lifeline.”

Still communicating

ALS is a neurodegenerative disease that attacks the motor neurons. As the disease progresses, these neurons begin to degenerate and stop sending messages to muscles. Eventually, individuals diagnosed with the disease lose the ability to move their legs, arms and body.

According to the National Institute of Neurological Disorders and Stroke, 20,000 to 30,000 people are living with ALS in the United States. The average lifespan for a person with ALS is three to five years.

Because ALS patients lose strength and movement in their limbs, Tobii has a built-in eye tracker. Shearn can sit in front of the device — without moving any part of her body but her eyes — and still communicate effectively.

Jocelyn Odlum, a speech pathologist at the University of Miami, met Shearn at an ALS support group in West Palm Beach and then began seeing her at the clinic. After evaluating Shearn, she got her started on voice banking. Shearn has been recording her voice every day for the past two months.

“Carole is an inspiration,” Odlum said. “She took this disease and is doing everything she possibly can to be prepared.”